What is Cerebral Palsy?

Listen to podcast created by National Center on Birth Defects and Developmental Disabilities (3/30/2008).
Latest entries
Leaving terms like "special needs" behind for more function/support focused language

Leaving terms like “special needs” behind for more function/support focused language

I have been thinking a lot about terminology used to describe Maya and other people who have “special needs”, “disabilities” etc. To clarify my intention these are words I use to signal a need for support that is not usually part of mainstream design, thinking and planning. Although I try not to get too bogged...
18 Products and One Adult with CP That Make Our Life Better

18 Products and One Adult with CP That Make Our Life Better

Over the last eight years, my husband and I have tried out countless adaptive and non-adaptive seats, chairs, blankets, silverware, cups, bikes, trikes, swings, wheelchairs, standers, walkers, etc., while trying to find what works best for Maya and for us as her caregivers. Since I know so many of you are pressed for time yet eager for...
The Complexity of Vision Problems in Children with Cerebral Palsy

The Complexity of Vision Problems in Children with Cerebral Palsy

This is the third post in a series of posts regarding vision and cerebral palsy. Here are links to parts one and two. Until last year, when I saw Dr. Christine Roman-Lantzy speak on Cortical Visual Impairment (CVI) I knew very little about the complexities of vision and visual processing. After that lecture, I realized...

Introducing the term “Early Developmental Brain Injury (EDBI)” and a new framework for discussing cerebral palsy

It’s been 10 years since professionals and scientists last revisited the use and relevance of the term “cerebral palsy.” During that time knowledge about brain function and neuroplasticity has increased exponentially. For that reason, it’s now time for a change that reflects a more modern understanding of this condition and conditions associated with having a...
Things to know about including Maya in your classroom-Creating a Teacher's Resource Guide

Things to know about including Maya in your classroom-Creating a Teacher’s Resource Guide

The following is a resource sheet, the Teacher’s Resource Guide (TRG) which I compiled for Maya’s new teachers to help them better understand her behavior, how she learns, and how to optimize her participation in the classroom. She attends a private school and Miss K. is her teaching assistant/aide. Her primary teacher has more detailed information...
What a parent of a special needs child wishes her friends knew:

What a parent of a special needs child wishes her friends knew:

  This is a guest post contributed by parent Allison Combs. The Combs have been married for 10 years and have two children ages 8 & 6. Their son was born at 32 weeks and later was diagnosed with Cerebral Palsy. 1. We feel alone. Please don’t intentionally or unintentionally exclude us or our children from...
The Peach Pit

The Peach Pit

Yesterday Maya ate a peach on her own for the first time. She recently developed the dexterity to do it. She held it in her hands, slowly turning it while juice ran down her chin. Maya loved this experience and I relished in her happiness and her progress. She continued eating until she got down...
Unpacking Maya’s Intense Feelings Before They Become Tornadoes

Unpacking Maya’s Intense Feelings Before They Become Tornadoes

Teasing apart and making sense of the behavior of a child with multiple medical issues is often difficult for parents. Sometimes, my husband and I struggle while trying to determine if Maya’s behavior is typical of children or is influenced by pain, sleep deprivation, epilepsy medication side effects, frustration with her limitations, food sensitivities, or...
Grief Exposed

Grief Exposed

Photo credit: Kelly Gaines The rare times I picture the grief I feel about Maya having cerebral palsy I envision it in a cocoon-like incubator with layers of gratitude and hope spun around it. These layers help me cope with her condition and cushion me from falling into the raw grief and sadness that hides further...
Rethinking Accessible Playgrounds

Rethinking Accessible Playgrounds

Ensuring universal accessibility and inclusive play at local playgrounds is a hot topic right now among many of my friends whose children have cerebral palsy. It’s summer time, and parents and children naturally want to go to playgrounds. These visits often reveal accessibility concerns and lead to conversations about how few recreation offerings there are...
Field Day 2014-Maya tells Mom, "I'm going, so stop pushing the issue!"

Field Day 2014-Maya tells Mom, “I’m going, so stop pushing the issue!”

When will this mom ever learn? In my attempt to protect Maya I told her teacher that we would not be attending the school’s Field Day today. I planned to make an alternate fun activity day for her at home. She was not very happy with me when she found out. We talked about it...
CVI Part Two: Dr. Christine Roman’s CVI Range Assessment

CVI Part Two: Dr. Christine Roman’s CVI Range Assessment

Since writing the first part of this series I have had the pleasure of speaking with Dr. Christine Roman the developer of the CVI Range Assessment. I also have done my best to perform this assessment on Maya. The CVI Range has a 0-10 scale, and describes three broad phases of visual processing development. Where...